What Functioning Actually Looks Like When You’re Chronically Ill
Things Chronically Ill People Do Just To Function
Nicole Pedra’s video popped up on my Facebook feed the other day. One of those moments where you stop scrolling without even realising you’ve stopped. I watched it once, then again, nodding along. It felt like my body was responding before my brain had time to catch up. I followed her straight away.
It was titled Things Chronically Ill People Do Just To Function, and honestly, that sentence alone got me. Not in a dramatic way, just that quiet feeling in your chest when someone finally puts words to something you live with every day but never really explain.
If you live with chronic illness, chronic pain, autoimmune disease, fatigue, or any long-term condition, you already know this. Functioning is not the same as thriving. And functioning usually comes with a long list of small, barely noticeable things you do just to get through the day. Things other people don’t clock. Things that are actually survival tools.
So I wanted to talk about the ones she mentioned. The ones that hit home for me. And maybe for you too.
Holding your head in your hands
Leaving early
Sighing often
Zoning out
Leaning on things
Needing to step away
Sitting any chance you get
None of these shout illness. None of them announce pain. But every single one is a quiet adjustment. Just trying to function in a body that does not cooperate on demand.
Holding My Head in My Hands
This one landed straight away. I do it without thinking. Sitting at the table. On the sofa. At my desk. Elbows planted, head in my hands, eyes closed or staring into nothing.
From the outside, it probably looks like boredom. Or stress. Or just being tired in a normal way. But for me, it’s pressure management. It’s grounding. It’s trying to steady dizziness, pain, brain fog, or that heavy, full feeling behind my eyes when everything feels too much.
Holding my head isn’t giving up. It’s me holding myself together.
It’s one of those chronic illness coping things nobody really talks about. Your body just finds ways to soothe itself when rest, medication, or explanations aren’t enough.
Leaving Early Without Explaining
Leaving early is almost a skill when you’re chronically ill.
You’re calculating before you even arrive. How long can I manage before my symptoms flare? Where’s the exit? Can I sit? That one matters to me because standing is debilitating. Can I leave without it being awkward? What excuse sounds acceptable today?
Sometimes I leave early because I’m in pain. Sometimes because the fatigue rolls in like a heavy curtain and my brain just shuts down under the weight of pure exhaustion. Sometimes because my body is screaming, even though I look fine on the outside.
And a lot of the time I don’t explain. Because explaining costs energy. Because I’m tired of translating my body into words that make sense to people who don’t live in it.
Leaving early isn’t rude. It’s self-preservation.
Sometimes I avoid places altogether unless I know I’ll be able to sit and won’t be stuck standing for long periods. It’s not about being antisocial or lazy. It’s about protecting myself from pain, fatigue, or dizziness before it even starts. I plan my outings around what my body can manage, which often means saying no to things I’d actually like to do.
I also avoid having to explain myself when people ask “how are you?” or “how have you been?” It’s easier to reply “I’m okay” than to go into all the pain and fatigue I’m actually feeling, just to sound normal and avoid feeling like a burden.
Sighing Often
I used to apologise for this. Now I try not to.
The sighs just come out of me. Deep ones. Heavy ones. Sometimes shaky. They’re not always emotional. They’re physical. My body letting go of tension. My lungs trying to reset. My nervous system asking for a moment of relief.
When pain is constant or fatigue never really lets up, your breathing changes. You hold your breath without noticing. You tense. You brace. And then the sigh escapes.
Sighing isn’t irritation. It’s regulation.
A lot of people living with chronic pain do this without even realising. And sometimes very deliberately. Because breathing is one of the few things we can still control.
Zoning Out Mid Conversation
This one carries a lot of shame.
Zoning out isn’t lack of interest. It’s brain fog. It’s cognitive fatigue. It’s that moment where your brain simply cannot process one more sentence because it’s already working overtime just to exist.
I’ve zoned out while someone’s talking directly to me. While watching something I actually enjoy. While rereading the same paragraph again and again and still not taking it in.
Living with chronic illness means your brain is constantly dealing with things in the background. Pain signals. Sensory overload. Hormones. Inflammation. Fatigue. All of it takes energy.
Sometimes there’s just nothing left.
If you’ve ever felt embarrassed about this, please know you’re not lazy or rude. Your brain is protecting you.
Leaning On Everything
Walls. Counters. Tables. Door frames. Columns. I lean all the time. I lean on my crutch.
Standing without support can be exhausting when your joints hurt, your muscles shake, your balance feels off, or your body just isn’t cooperating. Leaning takes some of the pressure off. It gives your body a tiny break without fully stopping.
Most people don’t notice. Or they think it’s just a habit.
But leaning is one of those quiet chronic illness adaptations that becomes automatic. Your body figures out how to save energy wherever it can.
Sometimes leaning is the difference between staying upright and ending up on the floor.
Needing To Step Away
There are moments when everything hits at once. Noise. Light. Conversation. Expectations. Pain.
So I step away. To the bathroom. Outside. Into another room. Into silence.
It’s not drama. It’s regulation. It’s giving my nervous system a chance to settle before it completely crashes.
When you’re chronically ill, your system is often already overwhelmed just managing symptoms. Add stimulation on top of that and it can tip you over very quickly.
Stepping away is how I stay.
Sitting Any Chance I Get
If there’s a chair, I’ll take it.
Standing is expensive. Walking is expensive. Being upright costs more energy than people realise.
I sit while others stand. I sit while waiting. I sit while showering. I sit while getting ready. I sit because my body needs it.
That isn’t weakness. It’s pain and energy management.
One of the biggest misunderstandings about chronic illness and fatigue is that rest is optional. It isn’t. Sitting whenever I can is often the only reason I make it through the day at all.
Other Ways I Make It Through
Over-Preparing
Over-preparing is my default mode. I carry water, snacks, medications, pain relief patches, and often a heat pack or two. I check and re-check before leaving the house, because leaving home unprepared feels ‘naked’ and frightening. One flare, one dizzy spell, one unexpected spike in pain, and suddenly what should have been a short outing can turn into a struggle just to get home.
It’s exhausting, but it’s necessary. Over-preparing isn’t paranoia. It’s survival. Every item I carry is a lifeline. Even small things, a bottle of water, a snack, can be the difference between making it through an appointment or sitting in the car crying because my body gave out.
Pacing
Pacing is an art and a discipline. I break tasks into tiny steps so my energy doesn’t vanish before I’m halfway through. Even something simple like making a cup of tea can feel like a full workout if I don’t pace myself. I find myself sitting down mid-task, closing my eyes for a minute, or taking a slow stretch, just to reset.
I do it quietly, without thinking, sometimes while others keep going around me. To anyone watching, it might look like I’m procrastinating or being slow, but really, it’s the only way I can make it through the day. Pacing is the difference between getting things done and ending up completely drained, sometimes for days.
Body Scanning
Body scanning is constant. I’m always noticing what hurts, what is stiff, what is tired. My mind runs through my body like a checklist I didn’t choose to write. I remind myself to relax my jaw, soften my shoulders, unclench my hands, release tension in my feet.
It’s exhausting in its own way, because it’s a job I didn’t hope for. My body never turns off, and neither does this background monitoring. Every twinge, ache, or flare gets logged, analysed, and accommodated before it becomes a bigger problem. It’s like living inside a list that never stops updating.
Mental Checklists
My brain is never just “here.” It’s constantly running through mental checklists. Symptoms, medications, appointments, energy levels, things I need to prepare for tomorrow, things I need to avoid today.
Sometimes it feels like the mental load is heavier than the physical one. Just keeping track of all the moving parts, while also trying to live, is exhausting. Forgetting a single medication or misjudging my energy can have consequences that ripple through the day, so the lists never stop.
Invisible Emotional Labour
Invisible emotional labour is always there. I manage reactions, I explain, and often hide my symptoms. I smile and appear “okay” even when I’m not. I constantly weigh how my body feels against how the world expects me to appear.
It’s draining because I have to perform normality on top of everything else. I censor myself, choose words carefully, decide when to speak up and when to nod along quietly. Living with chronic illness means balancing reality with perception. It’s a hidden workload that no one notices unless they’re living it too.
The Invisible Labour of Functioning
What stayed with me most from Nicole’s video was how ordinary all of this looks. How easy it is to miss. And yet how much effort it takes.
This is the invisible labour of chronic illness.
The constant checking in with your body. The small adjustments. The decisions you make every minute without even thinking about them. Wanting to do something and knowing your body might not let you.
If people want to understand chronic illness or invisible disability, this is where it starts. In noticing. In believing. In not demanding explanations for things that hurt no one.
And if you recognised yourself in any of this, I see you. You’re not imagining it. You’re not failing. You’re not alone.
You’re doing your best in a body that needs more care, more rest, and more compassion than the world usually allows.
And that matters.
Sometimes just seeing your experience reflected back is enough to soften the edges a little.
It did for me when I watched that video. And I hope this does the same for you.
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, TMJD, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
You’re not alone here. You’re welcome to stay as long as you need.
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Functioning means getting through daily life despite pain, fatigue, brain fog, or other symptoms. It’s not the same as thriving, it often requires small adjustments, pacing, and constant energy management. Functioning can look ordinary on the outside, but it usually takes a lot of invisible effort.
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Leaving early or sitting whenever possible is about managing energy and protecting the body from pain or fatigue. It’s not rude or lazy, it’s self-preservation. Even something as simple as standing for too long can drain energy quickly and make symptoms worse.
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Absolutely not. Zoning out is usually cognitive fatigue; your brain simply can’t process more because it’s overloaded. Sighing is often a physical release of tension or a way to reset the nervous system. Both are normal ways a chronically ill body regulates itself.
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It’s a combination of strategies: pacing tasks into small steps, over-preparing with snacks or medication, taking breaks, leaning for support, and constantly checking in with your body. These small adjustments help make everyday life possible.
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Invisible labour includes all the background work most people never see, monitoring symptoms, balancing energy, explaining or hiding pain, managing emotional responses, and making countless micro-adjustments to appear “okay” while dealing with real challenges inside. It’s tiring work, but essential for survival.
